We as a family are taking on the 5k inflatable challenge to raise money for children like Arlo all money raised will go to the PANS/PANDAS UK Charity. With this we wish to spread awareness around a condition our son was recently diagnosed with PANDAS.

PANDAS stands for "pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections" in simple terms its when strep throat goes untreated and causes inflammation to the brain.

ARLOS STORY:

Back in August 2025 our little boy woke up one morning different. Arlo had developed overnight violent head jerks causing major concern he spent many days in hospital having blood tests and an MRI scan for everything to come back normal. We were told he had tics which if still present in 12 months time could mean he has tourettes and we were sent home with a leaflet on tics and told that there was nothing that could be done.

As a mum i watched my child struggle to perform the hobbies he loved to the same ability he became angry and defiant at home and physically exhausted we prioritised sleep like no tomorrow and i started a diary to narrow down anything that helped him or made things worse. In doing this we began to witness nose bleeds and what i believed at the time to be tic attacks where he would be absent for a while then perform multiple Tics, whether these were tic attacks i do not know. He started to wet the bed have sensory issues OCD, vocal tics, bursts of anger and behavioural issues in the home alongside Compulsions, loss of appetite and experienced night terrors. I had obviously joined every single support group on facebook going where i came across posts on PANDAS and noticed some similarities however i never recalled Arlo having strep or being really poorly nonetheless i tried to find a specialist locally to rule it out. I finally found Dr Tim Ubhi at the London Pans clinic i was hesitant at first constantly second guessing myself but then me and dan decided we had nothing to lose and we needed to know if our childs brain was being attacked by his own immune system or if it was infact tourettes.

Finally after appointments and tests it was confirmed Arlo had PANDAS and so his treatment journey began we currently have our Arlo back at 80% and he has experienced a recent flare but we know this is going to be a long journey for him with chances of flares and relapsing but, hopefully one day we will get him fully back. Sadly without going private i dont know how we would of got Arlo diagnosed let alone treatment for him as there are no NHS guidelines for PANDAS or PANS ive even had to explain recently to the doctors what PANDAS is during an appointment for Arlo. My heart breaks for the families and children that dont have the option to go private which is why us as a family want to spread as much awareness as possible to make a change.

PANS PANDAS UK are the UK’s only charity supporting families living with the neuropsychiatric conditions PANS and PANDAS. These conditions often develop suddenly, sometimes literally overnight, and can be both devastating and frightening.

With your help today we can build a future where every family living with PANS or PANDAS can access the right care pathway, treatment and support when they need it most.

For more information on the charity please visit their website www.panspandas.org.uk

Below is a list of symptoms including ones that Arlo hasnt experienced simply to create awareness:

* Anxiety (heightened anxiety, separation anxiety, irrational fears, panic episodes)

* Tics

* Emotional lability or depression

* Irritability, aggression, severely oppositional behaviours

* Behavioural (developmental) regression (e.g.: increase in temper tantrums, loss of age-appropriate language, clingy behaviour not related to anxiety)

* Sudden deterioration in school performance (due to difficulties with memory, concentration, hyperactivity, impulsivity, new deficits of visuospatial skills)

* Motor or sensory abnormalities: dysgraphia, clumsiness, tics, new sensory sensitivities to light, noise, smell, taste or texture

* Insomnia and/or sleep disturbances

* Enuresis and/or urinary frequency

* Whilst not part of the diagnostic criteria, in approximately 25% of cases there have been reports of Psychosis and Hallucinations